It’s October: Are You Ready for Rett Awareness?

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by Mary Chapman |

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Supporters worldwide are marking Rett Syndrome Awareness Month, set aside each October to bring attention to Rett syndrome, a rare neurodevelopmental disorder that’s estimated to affect 1 of every 10,000 girls, and fewer boys.

From posting on social media to sporting temporary tattoos, participants globally are raising awareness and funds to battle the disease, and to support patients and their families.

The event is organized by the International Rett Syndrome Foundation (IRSF), which supports Rett families in more than 60 countries and works to accelerate research. The group was scheduled to kick off the annual observance with a Facebook Live event explaining how supporters can get involved.

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That’s to be followed by another such event on Oct. 4 to share what the organization has been doing to gear up for its ASCEND 2022 Rett Syndrome National Summit, set for April 27–30 in Nashville, Tennessee. The gathering brings together families, clinicians, scientists, and Rett organizations from around the world.

“Thousands of children and adults suffer from the limitations and challenges of living with Rett syndrome,” the organization states on a webpage about the event. “They need YOU to spread the word about Rett syndrome this month.”

It continues: “Countless people across the country still haven’t heard of Rett syndrome, which is why October is crucial for awareness, advocacy, and education.”

Using the theme #ALLINForRett, the organization is presenting a “31 Days” campaign in which supporters are asked to post a message on social media every day in October and get friends to donate to support Rett research, tagging @Rettsyndrome and using the hashtag #overpowerrett. The foundation has downloadable posts available that state, for example, “A child is born with Rett syndrome every two hours,” and “Boys can have Rett syndrome too.”

“We create a package every year to make it really easy for family and friends to raise awareness, everything from T-shirts to tattoos, and lots of things for social media,” Tim Frank, IRSF chief marketing and development officer, said in a phone interview with Rett Syndrome News. “We have personalized pages that people can take advantage of. You’d be surprised, people love to be able to support others. Just sharing your story of what life is like with Rett goes a long way.”

The foundation also has a new commemorative T-shirt available, as well as temporary tattoos supporters can wear, and take a photo of themselves with it to share on social media. The tattoos have the words, “All in for a cure.”

In addition, downloadable Rett resources and information, including a brochure, fact sheet, and infographic, plus a resource for newly diagnosed families, are available. There’s also a downloadable coloring book to help introduce patients and their classmates to Rett syndrome.

Other ways the organization suggests for people to get involved include swapping out their social media profile photo frame and starting a Facebook fundraiser. They can also help with the foundation’s goal of getting all 50 U.S. states to issue proclamations or resolutions declaring October as Rett Syndrome Awareness Month. A guide, draft letter, and sample statements are available to help. So far this year, Arkansas, New Jersey, and Ohio, along with the U.S. Virgin Islands, have made such issuances.

There are also virtual IRSF events to attend, including:

  • Oct. 3, the 15th Annual Minnesota Strollathon
  • Oct. 9, a Run for Rett 5K, the 5th Annual Virtual Iowa Strollathon, and “Throw for a Cure”
  • Oct. 16, “Rett Gets Rocked: Noodles & Company Dine Out,” and the 2nd Annual South Carolina Strollathon
  • Oct. 19, Bingo for Rett
  • Oct. 23, “Rett Gets Rocked,” the 19th Annual SoCal Strollathon: Virtual Edition, and the 14th Annual St. Louis Strollathon

Elsewhere, Girl Power 2 Cure, a nonprofit organization that also supports Rett syndrome families, is helping to spread the word about Rett by offering an educational flyer and, through a campaign called “Caught Being Awesome,” inviting families and supporters to share on social media a story and photo about someone who has made a difference in the life of a patient.

To help raise funds to fight Rett syndrome, the organization also has a donation sign that’s available in English and Spanish that supporters can place on a bucket, box, or other place in a local salon, convenience store, or like location. It also is calling attention to its video page of people and events.

On Oct. 9, a tailgate fundraiser called “Reverse Rett Morgantown 2021” will be held in Morgantown, West Virginia, to benefit the Rett Syndrome Research Trust, a nonprofit that seeks to find a Rett cure.

“We’re making resources available to help the community raise awareness locally and on the global front as well,” Frank said. “We’ve definitely seen a global impact from the huge outreach of Rett associations around the world participating.”

In the United Kingdom, for instance, the advocacy and research organization Reverse Rett has a fund and awareness raising challenge called “Do One Thing.” In it, participants are asked to perform a single activity — such as running a 10K, holding a bake sale, or swimming a mile — and share it on social media. They’re also asked to try to get donations for such activities to support the organization.

Rett Syndrome Awareness Month seeks to heighten awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals.

While the ongoing pandemic has moved most activities online, more supporters can now participate.

“Our community loves being together, so that’s a challenge, that’s the hardship,” Frank said. “Still, the fact that we’ve moved online has sparked a lot of innovation. It’s getting a lot more people involved.”